Book Review: Raising Henry: A Memoir of Motherhood, Disability, and Discovery

This article was written by a member of the SheKnows Community. It has not been edited, vetted or reviewed by our editorial staff, and any opinions expressed herein are the writer’s own.

Memoir writing may be the most difficult sort of writing there is, because to craft a story from lived experience takes a certain kind of ruthlessness: the willingness to reveal your most difficult moments and deepest flaws with unflinching honesty—without crossing the line into “oh poor me.”

It’s a tricky balancing act, I think, and one that very few writers do well—Mary Karr’s The Liars’ Club, Jeanette Wall’s The Glass Castle, Cheryl Strayed’s Wild come to mind—and to that list I’d now add Rachel Adams’ wonderful new book Raising Henry, a powerful account about her son Henry, who was born with Down Syndrome.

When Henry was born, Adam’s life was clicking along according to plan: she was a tenured literature professor at Columbia University with a wonderful lawyer husband, and a beautiful son named Noah. Sure, they worried about juggling the schedules of a two-career couple, about finding a good school for Noah, all the standard-issue worries—but for the most part, life seemed to be moving forward right on schedule.

And then Henry was born. Adams chose not to have the prenatal tests that could have predicted Down Syndrome and one of the (many) powerful moments in the book occur when she points out that when people ask her why she didn’t have those tests, what they are really asking is “how a well-educated, successful, ambitious woman like me came to have a child with Down syndrome.”

Adams doesn’t flinch from discussing the difficulties caused by Henry’s birth, from the attitude of doctors who seem to regard him (and his mother) as a problem to be dismissed as quickly as possible, to the quasi-horror on the faces of friends as they realize that Henry has A Problem. Henry's birth causes Adams to reflect on her own choices and the ways in which her ideas about success have been predicated on a swift upward arc fueled by perfectionism and boundless intellectual energy.

As a result of Rachel’s honesty—and humor (her struggles to bake a gluten-free birthday cake will crack you up)—Raising Henry offers insights at many different levels. I want to say that any parent will find herself nodding in agreement with what Adams talks about—the struggle of a working family to accommodate the needs of multiple children; the tensions caused in a marriage over the allocation of resources, whether financial, emotional, or physical; the difficulties of negotiating educational bureaucracies—all of us have, to some degree, been there and done that. At the same time, however, I don’t want to gloss over the particularity of Henry’s story by saying “oh, it’s just a parenting book,” because it is much more than that. As a scholar who wrote a book about disability and US culture (the well-received Side Show: Freaks and the American Cultural Imagination) Adams may have more equipped than others to handle the knowledge that Henry wouldn’t develop at the same pace as his older brother, but as she makes painfully clear, having an intellectual grasp of a topic and having to live with “the topic” are two radically different experiences.

Adams deftly mixes reflections on her own fluctuating emotions with concrete advice about how to negotiate the labyrinth of agencies that offer services to special needs children and their families. The generosity with which Adams talks about the many people who help Henry and his family in his first three years of life—from the woman who becomes their nanny, to the therapists in the early intervention programs, to the teachers at day care—illustrates a key point of the book, which she summarized in an interview: “Having a child who is disabled forces you to realize the ways we are all dependent on one another, and to appreciate the networks of support that are available to those who need extra help. Before Henry was born, I never wanted to accept help from anyone. Now, I take any help that is offered to me and that, in turn, has made me a more generous and giving person.”

The complexity involved in raising Henry—and his brother Noah—also bring Adams back to her original academic research: disability and disability studies. As she is wrestling with any number of social service agencies to get the best possible care for Henry, so too is she beginning to advocate more strenuously for special needs people at all points in their lives, from childhood through to college. She starts to see the world around her with different eyes: to notice, for example, that a wheelchair access ramp is located in a dark loading dock. She becomes, in her words “an unwitting, and often bumbling, crusader.”

Her efforts, in this book at least, seem far from bumbling, however. In fact, one of the joys of this book—and it is a very joyous book, despite its weighty subject—is the elegance with which Rachel brings together her intellectual and emotional selves. She realizes that her work might help, even slightly “to change my world.” Her words and her work resonate for me not only because I am a literature professor who has sometimes wondered whether my scholarly pursuits have any meaning “in the real world,” but also because I am the mother of a preemie who, when he was born twelve years ago, weighed less than two pounds. Like Rachel, I spent months and months navigating the maze of early intervention, where our family’s services often seemed to depend on the mood of an overworked social worker. RaisingHenry not only reminded me of the early, scary months following my son’s birth, but also the joy that accompanied his every small achievement; Adams' work also renews my belief in the power of intellectual engagement to have an impact on the world around us.

Raising Henry ends just at Henry's third birthday, when he is "aging out" of early intervention. His story continues, of course, (you can click to this article to find out about his first week of kindergarten), and his memory will stay in your mind long after you’ve finished the book.